My Story

My name is Dennis Smith, born 10 March 1946 (bloody old eh?). I have a wonderful wife, Irene, two married sons, and two grand children, Daniel and Lara. I live in Canberra the Capital of Australia.

I was diagnosed with Parkinson’s Disease in May 1999 while working as a Personnel Consultant in Canberra finding contract positions for IT Consultants. This diagnosis came out of the blue and was as big a shock to my General Practitioner as it was to me and my family. Prior to this diagnosis I had been having difficulty handling the pressures of the job and was disorganised and couldn’t concentrate. These problems were more noticeable to me than the fact that my left arm wasn’t swinging and I was making an extraordinary lot of errors using the keyboard.

Luckily I had an Income Protection Policy with Tower Australia Limited and was able to take full advantage of this by retiring from my job in November 2000 on quite a reasonable monthly payment. This has made coping with Parkinson’s Disease much less stressful than it may otherwise have been.

I contacted Parkinson’s ACT Inc, the Canberra Support Group for PD, telling them that I didn’t want to see or talk to anyone with PD and was only interested in seeing what documentation they had. They were very understanding and helpful. Twelve months later I contacted them again offering to help in any way that I could, and ended up as the Treasurer of that Organisation. This was about October 2001 and I continued as Treasurer until about Sep 2003 when my wife and I did a Seachange and moved to Merimbula on the South Coast of NSW. We returned to Canberra in July 2006 and I am now currently President of Parkinson’s ACT Inc.

The Parknson’s disease has progressed significantly over this time and is now having quite an impact on my quality of life. Luckily my family and friends are very supportive which helps a lot.

At this point in time (May 2008) my symptoms include slowness of thought and movement - as my medication wears off I notice that my brain seems to slow down and then my body follows. I do everything in slow motion and everything becomes difficult to do - tying shoe laces, doing up buttons, cleaning teeth, etc - normal everyday tasks are not easily handled. Another thing I notice as my medications wears off is that I feel like I am made out of lead and my arms and legs feel heavy and don’t want to move.

Also I suffer from freezing, not the cold type, but the not able to take a step type. The signals from my brain to my legs just don’t get the distance and I am frozen to the ground. There are a number of techniques I can use to try and get started and most times ones of these will get me going into a Parkinson’s Shuffle.

It must be pointed out that when my medication is working properly all my symptoms are very mild and most people wouldn’t realise that I have the disease.

Well that’s the bad part of my story and now for the good part.

In early 2005 I discovered a previously hidden ability to write rhyming poetry and since that time have self-published two poetry books, “Out of My Mind” and “Further Out of My Mind”. The first book containing over 100 poems and the second exactly 100 poems. I am welll on my way to my third book with 74 new poems written. I believe that PD has switched something on in my brain to provide me with this new skill. Thanks PD.

I have also invented what I call Parkinson’s Photography, what you do when you can’t hold your camera steady – I have sold many of my photos and recently had an exhibition at the National Convention Centre which was extended from 4 weeks to 6 weeks due to public demand. Go to Page "Parkinson’s Photography" to view some of my work.

Update to My Story – starting late 2008

In the later part of 2008 my Parkinson’s symptoms were getting more severe and my medication was getting less effective. My Levodopa tablets were unreliable – sometimes they would work and sometimes they would not – when they worked they might be effective for three hours or half an hour – there was no way I could predict what was going to happen. I was also self-injecting Apomorphine as required. When I first started on the injections they were very effective and would kick-in after about five minutes and and last until my other medication took effect. But as my Levodopa became unreliable so did the Apomorphine.

Life became particularly frustrating and I think I began to lose my sense of humour. Having no control over the timing of my medication made it impossible to plan anything as we didn’t know whether I’d be “ON” or “OFF” (technical terms for whether my medication was working “ON” or not working “OFF”). The worst symptoms were “Freezing” which I have described before and Dyskinesia – which is involuntary movement where your body just keeps moving and jerking nonstop. It is extremely tiring.

In December 2008 I began participating in a formal trial of a Parkinson’s drug called Duodopa - a Levodopa-Carbidopa Intestinal Gel. The gel is infused from a pump directly into my small intestine through a tube inserted through the skin of my abdomen into my stomach. This was organised through my Neurologist, Dr Victor Fung and the staff in the Neurology Section at Westmead Hospital.

I was infused for sixteen hours each day with the pump being turned off and disconnected for eight hours overnight. I would connect it and turn it on at 6:00am and give myself a “Morning Dose” to get me going. The pump would then give me a small shot of medication every forty-five seconds which meant that I was getting an even dose sixteen hours per day. Unlike tablets which give a boost some time after talking them and gradually wear off before the next tablet.

The improvement in my condition was nearly immediate and for the next twelve months I had little or no PD symptoms. Life was normal again.

However, gradually my most common symptoms started to reoccur and by late 2011 things were not going well. The Dyskinesia started to appear more often during the day and was much more severe than in the past. Often in the evenings I would be physically and mentally exhausted from the continuous uncontrollable movements of my whole body.

Unfortunately, at the same time my ability to walk also became drastically impaired to the stage where I would shuffle about using a walking frame. I would often stop and then couldn’t start again. Going out was beginning to be a nightmare with my “Rockin ’n rollin” Irene and I called my Dyskinesia and my inability to get about easily. My balance was also badly affected and I had a number of quite bad falls, one requiring nine stitches in my face.

Things were not looking good or 2012 as the Dyskinesia is caused by too much medication and the freezing by not enough - real catch 22.

Then something unexpected and unbelievable happened:

On 29 December 2011, I had a fall and broke a bone in my right hand ending up with plaster from my fingertips to my elbow This was obviously going to make life more difficult especially overnight when I am not medicated. I have never medicated at night so I end up “OFF”. Also I don’t sleep well and spend a lot of the night shuffling around the house, watching, TV, reading, computing, etc. With restricted use of my right-hand it was going to make it even more difficult and I would have to wake Irene to help me.

We were thinking about his when Irene suggested that we leave the Duodopa Pump on all night and see if that would help as I would be “ON” all night and it might make it easier for me to do things. We decided that we would give this a try using a lower dose of the drug overnight. So on the evening of 29 December we commenced the new drug regime.

On 3 January we noticed that I didn’t seem to be freezing anymore and my Dyskinesia had also improved. The following few days we just could not believe our eyes as my symptoms continued to improve. Realising that it was not an illusion I first parked the walker away out of sight and then threw my walking cane into a dark corner. On 10 January 2012 we rang my Neurologist in Sydney and told him what had occurred and whether infusing the drug 24 hours a day was going to cause some problems. He was thrilled to hear about the improvement in my health and said to continue the new treatment.

It is now over two months since the first 24-hour dose and I still feel great, I can walk without hesitation or freezing, my Dyskinesia is a lot less severe and there are many days when I have none at all. As an added bonus, my face has developed a bit of character other than the blank look. I feel like I have been given a new lease on life.

Unbelievably if I hadn’t fallen and broken my hand I would still be shuffling behind a walker.

What a positive way to end an update to my fight with Parkinson’s Disease.

Update 04 November 2012

It is now 3 years and 11 months that I have been using Duodopa and life is still good. I am sill being medicated 24 hours per day following the success of doing this in late December 2011 following a fall and broken hand.

I have no real “OFF” time at all apart from occasionally noticing tht I am starting to slow down, at which time I give myself an Extra Dose which I can only do every 2 hours. It is not a good idea to be taking too many Extra Doses a day as it makes more sense to increase the Continuous Dose to try and stop these small hiccups. Things that seem to have an effect on my symptoms include lack of sleep, general tiredness, stress, cold weather, social occasions occasionally, etc.

Sometimes there might be a minor hesitation going through a doorway, but only if I am distracted, for instance carrying a couple of full glasses.

If I am concentrating hard on some task my chin has a tendency to tremor, it is quite noticeable, but does not worry me at all.

That’s about it for problems during the day. Nearly normal.

Night times on a lower Continuous Dose are not quite as comfortable as they first were under my 24hr regime but nothing like before Duodopa. My only real symptom is having trouble walking. This seems to be mainly resulting from the fact that the toes on both feet seem to cramp and try and clutch the floor making it very difficult to lift my feet.

Some times at night I get a numb feeling in both calf muscles that lasts about one hour.

Thanks to Duodopa my Parkinson’s symptoms are well under control.

MY THOUGHTS ON DUODOPA

There is a description of Duodopa and me in the Part “My Story” which describes my life with Parkinson’s from diagnosis through to having years using the drug.

From my experience, Duodopa has improved my quality of life dramatically and I would recommend that anyone with advanced Parkinson’s who gets the opportunity to go on this drug should definitely give it a try – you have nothing to lose. The pump just becomes a part of your normal day and I often forget that I am carrying it and the maintenance of it is simple and takes very little time. I see it as part of my normal life like cleaning my teeth and shaving.

I have had no real problems with tube entering my body – no infection in the nearly 4 years I have been using Duodopa. It’s just a matter of following procedures to keep the site clean.